Radiotherapy week 2

Happy Holidays to everyone!!!

I am slight a bit delayed in my greeting, but I hope everyone is enjoying this festive time of the year with their family and friends.

My throat started to give me discomfort later last week, and today it's beginning to give me pain when I swallow. I go to the hospital every weekday for the radiotherapy, but I no longer feel nausea. It's either I somehow overcame the fear of the hospital of it was just a cold I had last week. (Although I still do not wish to imagine myself going through chemotherapy ever again...) With the healthy mind and soul, I have been spending my day like a normal young woman taking a break from busy life, doing whatever I feel like doing, which has been filled with spontaneity, restfulness, and excitement. Spending time according to your will and feel is such a luxurious time. Time is more than just money.

お地蔵様
(Jizo, a guardian deity of
transportation safety)
was wearing a knit cap!!  

Last week I went to a friend's house in Tokyo with my family to attend a holiday party. It was my first and the last time to visit Tokyo in the year of 2011. I used to go to Tokyo often to visit friends or attend events when I'm in Japan, but this time Tokyo seemed much further away than I've ever felt before. Because I still get tired easily, I was excited for the party but at the same time anxious that I may not make it through the party.

Fortunately, I was able to make it to most part of the party. It was a lot of food, sweets, and laughter. It reminded me how fun it is to spend time with friends and family. Special thanks to Sakurai family :)

Please stay warm, everyone. And spend rest of the 2011 with minimum amounts of regret, to welcome the new coming year.

よいお年をお迎えください。

Radiotherapy week 1

Lunar eclipse on 12/10/2011

Radiotherapy has been alright so far. It's better than chemotherapy for sure, but it's not a fun experience still. I wish all treatments are exciting in some way that it could reduce psychological stress on patients.

Each appointment of radiotherapy takes about 15 minutes, where the 1 minute is used for actually radiating my body, and rest of the time is spent for preparation of the machine. Fortunately, there has been no long waiting time involved for radiotherapy; radiology department knows how to schedule patients well :P

There is no pain involved in the therapy, but it maybe because I caught cold or more from psychological stress from being at hospital everyday that I have been feeling noxious all week.

Although I am scheduled to be at the hospital on the weekdays, I realized that I won't have any full consecutive 5 days that I have to go to the hospital. Next week there's a holiday for Emperor's birthday, then the week after is new year's break that the hospital is closed. I hope my nausea will disappear completely soon and no side effects appear at all, so that I can be in the festive mood soon!

Radiotherapy...0/15~20

Leaves changing colors!! 

First radiotherapy appointment

Today I had an appointment with my radiology doctor to discuss about my treatment plan. The Radiology Department was a lot less crowded; my appointment time was at 10 am, I arrived there at 9:50 am thinking that I will wait for 1~2 hours, but I got to see my doctor at 10:15 am!! Amazing. 

Here are the details on my radiation therapy plan:

• Total of 15~20 radiation will be done, one treatment everyday starting from next week Wednesday
• The radiation strength of 20 to 30 Gy will be applied to the area where my lymphoma first appeared (left lower neck, left chest, and left armpit

Possible side effects:

• Throat sore (so no alcohol for another 3 weeks :( )
• Skin where the radiation was applied will turn red temporarily
• The radiation treatment may also affect salivary gland, which may permanently decrease the amount of saliva production
• The radiation treatment will increase the chances of the onset of cancer in the future, like in 10~30 years

After the doctor's appointment, I got to make a mask for the radiation treatment. I didn't know what to expect, but it was indeed interesting. I'll write about my experience in the next posting. 

もみじ... Japanese Maple

Radiation

Now I think back, I have been taking long flights (normally 8+ hours flight) at least twice a year since I was fourteen, I have done 2 CT scan so far, and now I will be going through radiation therapy. Not only that, I live in Japan now, where the Fukushima nuclear accident has not yet been resolved. That's a lot of radiation I've been and will be exposed, more than what an average human being would be exposed in his/her lifetime. Will this onset another cancer later in my life? I certainly hope not. 

And guess what?

My internal medicine doctor (who I had been seeing every week) told me that my blood count is sufficient for me to start eating anything. This means I can start eating sushi everyday, again! Nevertheless, my doctor said I should still avoid crowds so I can decrease the chance of catching cold. 

Chemotherapy 8/8...done with chemo!

Special thanks to Nakai-Sensei for
the and-made adorable charms!

Two Fridays ago, I was able to do the last round of chemo (and hopefully the last one of my life)!! As for the chemotherapy, I was put to sleep during the injection so I didn't have to fight through the emotional instability. I still experienced nasty side effects afterwards but knowing that it is my last round, it helped me to recover psychologically much faster than physically. 

Every round of chemo I experience, I realize that my psychological health comes before my physical health. I've read in the same book I introduced last time (Girls Story by Atsuko Asano), "the most difficult illness to cure is the one that the patient lacks willingness to cure." There is also the famous Japanese proverb, 「病は気から」, meaning "illness starts with the mind," expressing the importance of mind that plays in human health. I bet there's a similar proverb in English, too.

What's next?

Once my WBC# and its segment are recovered, the radiotherapy will start. I have an appointment with the radiotherapy doctor next week Tuesday, where I may start the therapy later next week. And guess what? If my body is recovered to normal, I get to eat sushi!!!! I've written my cravings for raw fish numerous times, and it had been indeed a pain to live in Japan where there's full of temptations for raw fish but not being able to consume it. 

Chemo 8/8 attempt failed :(

Unfortunately, my white blood cell count and segs (segmented neutrophils) was insufficient to carry on the chemotherapy yesterday. (WBC# = 1700, SEG = 34 %, where if the seg count is less than 500 the patient is at increased risk of infection). I will be going into hospital again this Friday, and hopefully the WBC# is increased enough to do the last round of chemotherapy!

Strangely enough, even though I didn't have chemotherapy yesterday, I was feeling noxious and tired all day. I always feel nervous on the day and the day before chemo, so maybe the body was anticipating the horror of chemo every other week.

Lucky

When I think of cancer and other types of illness, they are simply a death threat, and there's nothing good about it. Or what's good about illness always seemed to come with pity that I could not resonate. The pain a patient experience can never be shared by others, and frustration follows a patient everywhere.

Last night I was reading a Japanese novel, where I discovered the happiness of being a patient. I was so intrigued by the line that I even felt lucky that I am ill:


「病に倒れた人は、確かに不幸ではあるけれど、恢復の喜びを経験できる幸せもまた手にしている。水が飲める幸せ、まっすぐ歩ける幸せ、身体に痛みがない幸せ、ほんの少しでも物を口にできる幸せがどれほど貴いか病まなければわからない。病んでこそ味わえる幸せがあるのだ。健やかな人には、決して知ることのできない幸せがある。」ガールズ・ストーリー、あさのあつこ


Here is my attempt in translation:

"People who fall victim to illness, are indeed unfortunate, but they also receive the fortune for being able to experience the joy of recovery. How the happiness for being able to drink water, the happiness for being able to walk straight, the happiness for feeling no pain in the body, and the happiness for being able to eat even a small portion, cannot be understood unless you are ill. There is happiness that can only be experienced through falling ill. And there is happiness that can never be understood by a person with full of life." --Girls Story, by Atsuko Asano




This is why I felt so pleasant when I could eat a full meal again. This is why when I felt like a winner when I could turn on a laptop again. And this is why I feel so energetic than ever that I could do anything once the side effects go away.

I am a lucky girl :)

Chemo 7/8...almost there

There are a lot of things I am unable to carry on once the drugs are injected, and then bit by bit I begin to get my normal life back. Recently I realized that "turning on a computer" has been the key action for me; once I can turn on a computer, I feel nearly fully recovered. Anyhow, it surly feels good to be back!

The chemo 7/8 was terrible, it was the worst one after all. I cried pretty badly at the hospital during the injection, so the nurses decided to put me onto sleep. I actually cried during the chemo 6/8, too. It's weird because I understand knowledgeably that the drugs are not going to kill me. But when I see the bottle of drug, the nurses, and my left arm with spots from injections, I just go into panic. Well, a slight nausea is starting to creep up as I write this blog about last week, so I'm going to stop talking about it. Right now I can't even watch a TV shows that has nurses and hospitals in it.

2 weeks ago Yukari and Keibun visited, and we went to eat...fancy hamburgers!!

Other than that, I'm happy now, simply because I don't have to go to hospital for another one week, and I get to do whatever I want!! I'm going to hang out with Sawako tomorrow, and my sister is coming back home over the weekend hopefully, which I'm looking forward :)

Chemotherapy 6/8! ...Ensure protein and Olivia Newton-John

I found a plastic box that was 'melted' by erasers!!

YES, I only have 2 more chemo to go!!!!
I sound pretty excited now because I'm both physically and mentally stable but when side effects were hitting me last week, "2 more chemo" just sounded like "2 more hell" that I didn't even want to think about it. It's amazing how people can change their thoughts depending on the health. It makes me nauseous just thinking about my condition last week, and I think most of you are tired of me repeating the same thing, so I'm going to skip the update this time.

In a gist, I got through with chemo 6/8, but I still have 2 more to go.

Ensure protein drink is working...I think!
I had the weekly check up with my doctor yesterday, and my WBC was 2800 (+500 compared to last time)! I told my doctor that I have been drinking Ensure every morning, and he said it may be helping. I finished 3 large cans so far, and I'm working on the fourth can now. I also weigh 46 kg with stability, which is 2kg more than when I was hospitalized! I feel like my jeans got tighter too...or I might just be imagining?

Olivia Newton-John and Pineapple Classics 5k
I didn't know that she had a breast cancer. I actually only knew her name until I found her on a magazine at the hospital yesterday. She went through 6 months of chemo, which she says that just thinking about those days with side effects still makes her shiver. I feel her. One of her suggestion to chemo patients was to do something fun, creative, and sensational. I thought about my craft making, which has been a lot of fun lately.

Last week I received an e-mail about this event called Pineapple Classics looking for volunteers. Pineapple Classics 5k is a charity run organized by Leukemia and Lymphoma Society. It caught my eyes because the e-mail also mentioned about Hodgkin's lymphoma. Before I got lymphoma, this is a type of an event that I would just pass by, and I thought about how my thought may change after all the treatments are over. Will I support the cause even more rigorously? Honestly, I'm not sure yet. I feel like I'm going to have another identity crisis. Anyhow, if anyone's interested, it will be held on November 12th for Seattle, and there seem to be a number of other cities that will be holding the event.

The concept of beautiful prosthetic limbs and my hat

 

Right: The picture of "美しい義足（the beautiful prosthetic limbs）", courtesy of Shunji Yamanaka Design Laboratory. 

I had an opportunity to watch a presentation on the product design of prosthesis a couple of months ago, given by Professor Yamanaka of Keio University. "Prosthesis used to be something to be hidden underneath the clothes. But when athletes with prosthetic limbs sprint through the ground, it becomes something to show rather than to hide, then finally becomes something to praise. We wanted to support those athletes by designing a functional yet beautiful prosthetic limbs" Professor Yamanaka said, and displayed his creative product design. I was simply impressed by his idea of "functional yet beautiful prosthesis" and captivated by the delicate design. People almost always prefer something beautiful over ugly, when there's an option. It's kind of like how I try to decorate my hat with ribbons and flowers.

Then I wondered, how do these athletes feel when people say, "your artificial leg looks so cool!" Regardless of the cause of these athletes' loss of a body part, I'm sure they prefer to have their body part back, if possible. The situation is very different, but it's probably close to the feeling when people say "your hat is cute" to me. During the past couple of weeks, I wouldn't be wearing a hat if I wasn't sick. When I could simply be happy when people compliment my hat, that's when I fully accepted myself with lymphoma.

-------------

I was fully recovered last Thursday or so. It only left me 5 days with normal condition. Time is passing by really fast but when I foresee the next 3 chemo, it still feels like forever...arg.

Chemotherapy 5/8...「頑張りましょう」, one long battle

Some 2000~3000 year-old ceramic doll excavated in Japan.
Doesn't it look like it's saying "give me a hug"?

”頑張りましょう”

It took forever to get better after my 5/8 chemo. As expected. my soul and body expressed rejection to the drug injection on October 4th through giving me nausea even before at the hospital. Then during the pre-chemo check with my doctor, I told him that I don't really want to go do chemo (which I knew I hard to anyway), and he replied, "頑張りましょう!" which in translation means "do your best, make an effort, or try hard." It's a very common expression to cheer up people and a lot of people used it toward me, but I'm really starting to not like this expression, ”頑張りましょう” because I don't know what I should "do my best" about my situation.

On the other hand, I also don't know what is the best expression that would make me feel better. During the hospitalization about two months ago, I was trying to figure out what I should say to one of my neighbor patients with leukemia right before I leave the hospital. What I ended up saying was, "Let"s not give up." Her condition was much more devastating than my condition that sometimes I wonder if I had made her feel any better.

One long battle
The drug injection went as awful as it has been, and I spent next 6 days with the usual nastiness. I was afraid that my normal body is not going to come back ever until I'm completely done with chemotherapy. Fortunately, most of the side effects are gone now, although the stomachache still exists as I type this blog. I still cannot feel hunger but I know when to feed myself through feeling the pain in my stomach. I hope I'll have at least one or two days that I can feel 'normal' and do whatever I feel like doing.   

My normal days as a lymphoma patient

Last Tuesday I went to the hospital for the usual check up, and there was nothing really special. The WBC# was 3000 (-900 since the last count), my doctor examined my lymphoma on the neck and commented, "yeah, we still need to get rid of these guys. Only 4 more chemo!" Haha...yay. Additionally, probably because of the relatively high WBC# and the doctor's mistake, I still was feeling quite normal all week long this week. Nevertheless, I still got tired easily from walking around outside or even surfing the internet. Somehow I can't stare at the computer screen for a long time anymore; it makes me dizzy in about one hour.

I have been eating normally, and I started to drink the Ensure protein shake everyday since my aunt told me that I should be drinking more. Interestingly, it actually looks like I've gained a bit of weight since then. I was 44 kg all this time but now it's showing 45 kg for the past couple of days.

For my hair loss update, I have been wearing a hat to go out because it looks like I have a bald spot on top of my head. I still have a lot of hair and I'm shedding a lot at the same time, but at this shedding speed, I think I'm going to have a lot of hair left after the chemotherapy is completed. Nonetheless, my mom and I decided that we buy one wig in case. Then my mom bought one wig with its product name, "newscaster style wig." I'll post up a picture when I try it out.

My next chemo is coming up in 2 days. I'm not as scared as before but it's an unpleasant feeling that arise when I imagine myself going to hospital again.

4/8 Chemotherapy...finally half way!!

Good bye dragonflies, see you next summer

Last week, I went all out; I ate raw fish, raw eggs, fresh vegetables, and even drank some beer since my WBC# was normal in response to my doctor's mistake. Sushi never tasted better. My heart was even beating fast when I entered sushi restaurant, which I haven't been for last torturous 2 months. I had never realized how much impact sushi had been making in my life :P

On September 20th, the day for my rest of 4/8 chemo, my WBC# was unchanged from last week, and rest of the three drugs were injected. My vein hurt a bit during the injection, but it wasn't that bad. What was worse was the nausea. I was feeling it as soon as I entered the hospital, and as usual, it continued for next three days or so. I had a light fever all week then, so I was once again a zombie. Just like the other chemo recovery times, I spent most of my day laying down, bearing the pain and nausea. It did not feel any different from the other chemotherapy, it was neither worse nor better.

However, there was one improvement; I think I figured out a source of my mental strength. Perhaps it's because of the time when students start school at UW. When I thought of Seattle, I got jealous of the people who get to go to school, go to work, or whatever they want to do. The time of the year made me become conscious of myself that I am currently ill, and I got angry at lymphoma that has only been bringing me difficulties so far! As I laid down on the bed in pain, I truly wished and prayed that I want to get better soon so that I can go back to school, do research, study, get a degree, find a job, and live a normal life. Surprisingly, when I went through the whole process of picturing my life after the treatment, I felt a little better. It felt as though the nausea dissipated a bit. Since then, I had been using the same trick when I can feel nothing but disgust. It's good to know that I still seem to have a control of myself.

The summer seems to have left my hometown while I was laying down on the bed for the whole week. The temperature is now down to 25C or so, which reminds me greatly of Seattle summer.

So it wasn't 4/8 Chemo last week... :(

I finished 1 can of Ensure yesterday...hurray?

This morning I went to the hospital for the weekly check up, and found out that my WBC# was 3900 (+2000 from last week). The average for normal person is 4000~6000, so I'm back to a normal person. We wondered why and here is why. There was a communication mistake between my doctor and nurses that I was supposed to be dosed with all 4 drugs with reduced amount last week, not 1 drug with reduced amount. My doctor apologized, and said that I'll need to make up for last week's round next week. My treatment is extended by 2 weeks, and I still have 5 more rounds to go.....that just sucks.

When the nurse gave me an explanation for today's schedule last week, I did notice that it was different from what the doctor previously told me. I told the nurse about the discrepancy, but the nurse said "this is the order we received from your doctor," so I thought I was the one with misunderstanding. From next time and on, I will confirm with the nurse at least twice before we go on.

Training my mental strength
I also asked my doctor if there was a way to train my mental strength so that I may not feel noxious when thinking about chemo. My doctor said the anti-nausea medicine should help, but if not I can try yoga or bangee-jumping, basically whatever it may help. I'm thinking about trying yoga or meditation this week. If anybody has an idea about overcoming trauma, let me know :)

4/8 (?) Chemotherapy

My new hobby:
making flowers out of ribbons

On September 6th, Tuesday, I started to feel sick as soon as I entered the hospital. My mind and body was rejecting the reality that I have to do chemo again. My WBC# was 1900, which my doctor told me that it is insufficient to do the next round of chemotherapy as usual. Instead of the chemo menu I had been doing, only one drug (drug A) with reduced amount was injected into my body. So overall it only took 15 minutes, whereas it usually takes about 5 hours.

Just because this round was a short one, it didn't make my life any better. After the chemo, I still had nausea, loss of appetite, and light fever. Interestingly, I did not have ache in my mouth; I guess it was true that each drug causes different type of side effects.

Today I'm finally feeling better enough to turn on a computer and such, but I still feel sick thinking about chemotherapy and anything relevant to it. Even just thinking about the names of chemo drugs or seeing a scene of hospital on TV makes me noxious. I wonder if this is caused psychologically? And I wonder if there is anything I can do about this. Could I somehow train my mental to not send "sick" signal to brain when I think about chemotherapy?

On the title of this post, I wrote a question mark because it wasn't a full round of chemotherapy that I'm not sure if I'll have to do more rounds to make up. I'll have to talk to my doctor again...

The menstrual cycle

The WBC# of the week: 2200. A slight increase compared to last week.

I had X-ray and blood test last Tuesday. The intention for X-ray was to determine the lung damage caused by chemo. At this point, there was no damage observed.

Additionally, I told my doctor that my menstrual cycle seems to be disturbed that my period hasn't came for over the average cycle. My doctor replied, "You should expect not to have period for the duration of the chemotherapy." However, he stressed, "That doesn't mean that you cannot get pregnant. In the past, there was a patient who got pregnant during her chemotherapy. And babies don't want to go through chemo..." He didn't mention what happened to the patient, which I was curious to know but could not ask.

Although my doctor told me that my period will not come, it came as soon as I arrived home from the hospital. It is a strange coincidence. I wasn't sure if I should be happy about it, but I felt somewhat relieved that parts of my body is functioning normally.  

3/8 Chemotherapy...plane ride, side effects, and dreams

It's hard to tell but my collar bone is back!
But when I touch the area I can still feel the broken up lymphoma. 

Chemotherapy is like a plane ride. The only difference is that chemo doesn't really take you to anywhere exciting (or cancer-less world?). In order to get on the plane, passing through the long line for TSA is inevitable, just like the blood test is necessary before beginning chemo. I had been waiting for at least 45 minutes to get blood drawn every time, because there is always a long long line of people waiting to get blood test done, regardless of how early I arrive. Then, when you get on the plane, nausea hits you the entire plane ride, at least for me for most of the time. After the drug injection in chemo, I have this similar feeling of being on the plane for a few days with nausea. And with all the endless aftershocks in Japan, chemotherapy experience, for me, has just been like one traumatic plane ride.

As for the aftermath of 3/8 chemo, I had a light fever for the whole week last week, it felt almost worse than last time. It is the third time for drug injection, so it could be that the body is reacting to the drug even harder. There was a new side effect that appeared on my fingers:

These dark lines at the edge of my nails are present on all my fingers, but not on my toes. My doctor said some people get horizontal lines on the finger nails, too. 

Because I was once again not feeling well for the whole week, I slept more than half of the day every day. And almost every time I slept I had a dream, and when I woke up I get confused whether I am still dreaming or I'm back in reality. I dreamed about food often, even though my appetite was abnormal. I dreamed about eating apple pie, Indian food, KFC, McDonald's, and just really random food. Additionally, the most exciting dream I had was seeing everyone I knew. Somehow everybody decided to gather at my home and I saw so many people that I missed very much. After realizing that it was a dream, I wanted to see and talk to people so badly, and I wanted to become normal again even badly.

Last Tuesday my WBC# was back to 2100. Tomorrow I have the weekly doctor's visit. Hopefully the WBC# is still near 2000; perhaps it's time to drink Ensure and eat ripe bananas.

Recent photos#2

Baked a cheesecake with my sister

Gifts from Yukari...Duffy and ShelliMay

...and Mike!

With Yukari. She looks really cute with her new hair!

I haven't changed much, even though I've been able to make a golf ball out of the hair I lose during shower everyday. I have a feeling that I'm going to lose A LOT of hair this week after my third round of chemo. Maybe a size of softball? I think about the hair loss often, but I'm still not sad. I'm ready for it!

Numbers, numbers, numbers...Hodgkin's incidence rate

Hodgkin's lymphoma is a relatively rare type of disease, especially when compared with other cancer diseases. But how rare is that? I understand that there is no answer to why I got Hodgkin's lymphoma, just like there are countless unknowns with the mechanism of human body, but I wanted to know how 'special' am I to get this disease compare to everything else in the world.

In the U.S:

• About 8,000 (4,400 males and 3,820 females) cases detected every year, representing about 11 % of all lymphoma diagnosis. (1)
• Between 2002-2006, 12 per 100,000 Asian/Pacific Islander women in the U.S. were diagnosed with Hodgkin's lymphoma
• Where as the number is 20 per 100,000 women for White, the highest among all races (2)

In Japan:

• Hodgkin's lymphoma represents about 5 % of all lymphoma diagnosis in Japan
• 6 per 100,000 women in Japan are diagnosed with lymphoma per year (3)
• I per 100,000 is diagnosed with Hodgkin's lymphoma (4)

Other stats

• 3.85 per 100,000 people died from car accident in Japan, in 2009 (5)
• 24.9 per 100,000 people committed suicide in Japan, in 2010 (6)
• 10 our of 10,000 people may smell sounds, researchers says (7)
• 1 our of 10,000 people live to be 100 in the U.S. (8)

In conclusion, it seems like my disease is as rare as living till 100 in the United States. It is still hard to believe what I have, and I don't know how I should react to the fact. Sometimes I feel like I don't give enough thoughts to it.

References

1. Leukemia and Lymphoma Society

2. National Cancer Institute, Surveillance Epidemiology and End Results 

3. Goo healthcare, 悪性リンパ腫
4. Journal of the Japanese Society of Internal Medicine, No.7, p1825

5. 日本の交通事情, Universal Traffic Management Society of Japan
6．｢自殺｣、Wikipedia
7. Researchers: 1 Out of 1000 people may smell sounds, Foxnews, 2007
8. Medical researcher believes HDL may be key to a long life, Palm Beach Daily News, 2011

MY WBC is back!

A pix of gross medicine for my stomach...
it has a viscosity of liquid glue, taste
 of a bubble gum, and I get
to drink this 3 times a day to make my
stomach feel better :P

Yesterday I had a weekly checkup at the hospital, and amazingly, my white blood cell count (WBC#) increased from 2100 to 2500!! I don't exactly know what I did that was good for my blood cells, but it was a very pleasant surprise. Previously, my doctor told me that there isn't really a way to increase the WBC# unless we inject medicine into the body, so I was only expecting WBC# to decrease again. My doctor didn't give me much reason to why it increased, but it showed me that there may be something I can do about WBC#.

My aunt told me to drink Ensure and some people told me to eat ripe bananas for WBC# to increase. There aren't scientific explanations to neither of those, but that's what I ate and drunk, so I'm going to keep on going with it and see what happens next week!

Also, to decrease the pain I experienced on my vein, my doctor recommended that I do push ups, so that I can strengthen and thicken my vein. I confessed my doctor that, "I couldn't do push ups even when I was healthy." He looked at me, got silent for a bit, then laughed quietly. I guess he couldn't give me advice on how to do push ups...

2/8 Chemotherapy --- heat, zombie in pain, and hair

My doctor said my lymphoma got even smaller...I guess so?

It has been one week since my last post---there were a lot happened (sort of). I finally feel better to provide updates on my status.


My home's AC was not fixed until 3 days ago, so we spent 5 days last week sweating and whining. It was one of the hottest week for Japan, too...the temperature was 35+ C everyday with the humidity of 50+%. Also, it was even worse for me because I just had the second round of chemotherapy.


On Tuesday, 8/9, I went into the hospital around 9 am, and I was out by 4:30 pm. My WBC# was 2100; it is expected to decrease as I go on and there is no way to increase the value unless I inject the drug to increase the WBC. The chemo went alright, but worse than last time because the D drug was so painful during the injection. My vein at the location of needle was in crazy pain, it felt like someone was pinching my arm really hard for one hour, I thought the drug was going to squeeze my arm to necrosis. As soon as all the drugs were injected, nausea and stomach ache arrived. I quickly went back home with my mom, and started laying down on the bed in the hot steamy no-AC house. 


For the next 5 days, I felt like was a zombie in pain (or is zombie always in pain?). I had no motivation to do anything but lay down on the bed, I had consistent stomach ache, chest pain, and my body was fatigued all day. It almost felt like this time was worse than last time. And this time, I finally realized why so many people kept telling me to "stay strong." If I didn't 'stay strong', I would have fallen apart both mentally and physically. It meant a lot more than I imagined, to have wonderful people send me messages that push my back to stay firm.
------
Additionally, new side effect arrived the day after my second round; hair loss. Slowly but surely, I'm shedding. Yesterday I was able to make a hairball with a size of golfball from taking shower.


I read a number of blogs by lymphoma patients, and Rose Egge, a reporter from komonews (thanks to Suzie!) stated, "It took just a few strands for me to realize I may never be mentally prepared to lose my hair." Perhaps because I don't have great attachment toward my hair, I don't feel that I am emotionally affected by my hair loss, or maybe not just yet. I'm even curious to know how my scalp looks like, and sometimes looking forward for 'new hair'. I heard from so many people that one of the best thing about after chemo was that their new hair grew out so pretty with no damages!. 


My mom and I started to discuss about whether to purchase a wig or not. You can buy a cheap one with under $100, but the question is more of whether I will need it? Not to brag, but I do have a lot of hair. When I told Jiro that I'm starting to lose hair, he said "I think you have more hair than you can lose." Humm, I hope so. Another question is will I want a wig? That I will have to wait until my hair is gone and see how I feel about it.    

Broken AC and tomorrow

My home's air conditioner showed error and stopped working yesterday. The AC company is supposed to come later today and hopefully they can fix it today... Currently the temperature (indoor thermometer) shows 32 C, with humidity of 65 %. You can do the conversion. It's been a really wet day. Especially because I have been wearing a mask at home too!! The half of my face is sweating extra bad. Anyhow, I had been spending nearly entire day inside my house with AC for the past couple of days, so I felt that the Japanese summer was finally here :P

Tomorrow is my second round, the end of first cool of chemo. One cool of my chemotherapy is defined as 14 days, where the drug is injected every 14th day after the last injection. Recently I have been able to eat normally, though I haven't been able to gain any extra pounds or kilos. Hopefully the white blood cell count is sufficient enough to get to the next chemo. I am still a little nervous for tomorrow, and I have a feeling that this anxiety will never disappear until I am done with chemo.

Preserved flowers

Yesterday my best friend since my age was one digit, Sawako, visited me with a surprise gift! She brought beautiful preserved flowers!! I've never seen any preserved flowers as big and stunning...the flowers and her visit totally made my day.

From the last experience, I'm expecting to spend most of my time in my room the first 2~3 days after the chemo, so I'm planning on placing this vase somewhere that I can see from my bed. The only problem is that there has been earthquakes nearly everyday still, so I need to carefully chose a location where the vase would not fall off.

As for my condition, my weight is still around 44 kg, and still has a light stomach ache but otherwise I can eat pretty normally.

Doctor's visit

I went to TUH today for a followup of last week's chemo. The 'appointment time' was at 10:30 but as I've expected, by the time I saw my doctor was at 12:30. The white blood cell count was still 2900, which is low. But the doctor said as long as it's above 2000, I could continue on to the next round of chemo; nevertheless, higher the better. If it goes below 2900, I'll either have to wait a couple more days before the next round or they will decrease the amount of drug to inject. This also means that I should not go out to crowds and continue to wear a mask everywhere.

My weight is still around 44.3 kg or so...it's more difficult than I expected! (Even though I'm home all day long pretty much, drinking 1~2 cups of Ensure...) Thanks for those of you who gave me advice on weight gain tips. I hope to try them as much as I can.

Need to gain weight!

Now my weight is around 44 kg, and I'm aiming 46 kg before my next chemo. What am I eating now? Well, I still do not have much appetite and my sense of taste also changed that I'm still trying to figure out what I would and would not eat. I started to not like vegetables much (surprise!). Anyhow, to increase my weight and protein intake, my aunt who experienced ovary cancer last year sent me a four cans of Ensure protein powders from Taiwan. They are originally the U.S. products and there isn't anything like it in Japan. Now I am trying to drink two cups of Ensure protein shake everyday. Hopefully it works.

I also started drinking plum tea, hoping to strengthen immune system in my body. Hopefully, this works too.

If anyone has an idea about how to increase weight and strengthen my body...what to eat, what to do...let me know!! I have no restriction on my diet at this point, just nothing raw.

1/8 Chemotherapy

After first round of chemotherapy...it got smaller already!

I got back from hospital just a few hours ago, and the good news is that I don't have to go back into hospitalization anymore!!! From now on, all the treatments will be done as an outpatient. The idea of hospitalization this week was to determine the kind of side effects I might experience.

I couldn't go to sleep the night before, simply scared of the start of chemotherapy. I was distressed and frightened about losing my current body, by injecting all these drugs. To kill my lymphoma, I will be harming my other body parts as a payback. I cried for about two hours, then fell asleep. I felt fresh the next morning, thinking that crying was necessary for me to prepare mentally.

The first round of chemotherapy started at 7:00am on 7/24, with delivering anti-nausea drug through IV. Around  10:30am my doctor came and started inserting drug in the order of the name (A -> B-> D -> V). I didn't experience that much of a pain on vein that was expected from drug D. The last drug, V pretty much caused all the side effects I had later in the day and rest of the week---nausea, upset stomach, constipation, and mouth/tongue ache. The second and the third day was the worst---I couldn't eat, and I only felt better when I was laying down on the bed on my side. I lost 2 kg this week. I need to gain the weight back :(

The IVs were removed by the night of the second day. On the fourth day I felt somewhat better so I decided to go to the hospital shop to buy something. My room was located on the 10th floor, and I decided to go down by stairs, hoping to move my body a little bit. I went back up by elevator, but by the time I got back to my room my legs were shaking! Today, my legs are sore! I realized that my muscles atrophied really quickly. Today I'm determined to do light exercise everyday, at least 1 hour everyday.

Amazingly, my lymphoma shrunk a lot from the first round of chemotherapy. According to the head doctor of the Department of Hematology, Dr. Chiba, my swollen lymphnodes were stuck together, but now they are separated due to shrinkage. I got to meet Dr. Chiba on his once a week so-called "Professor's hospital rounds" (教授回診) where the head doctor of the department walk around to see patients with twenty other people, who are students and associate professors from his department. If any of you have seen the Japanese drama called The White Tower (白い巨塔), it was just like that. It represented the hierarchy in the world of physicians in Japan.

Surprisingly, my white blood cell count is really low already (~2900 on the fourth day (yesterday), where on average people have 4000~6000), so I need to be really careful about infection. Now I wear a mask at home, plan to not go out until my next visit, and need to make sure that my parents wash their hands and gaggle when they come home. My goal is to gain the weight and strength back before the next round of chemo, which is scheduled on 8/9.

Recent me

I found them on my home's stairs...they used to be on the separate shelf but both fell down during the 3/11 earthquake, so my dad decided to put them together so they can support each other : D  

With my sister, the day before I went into chemotherapy. I cut my hair short.

My treatment plan--ABVD chemotherapy

My parents, myself and my doctor discussed the chemotherapy plan last night. It is going to be the standard ABVD chemotherapy. I'll list out main points, possible side effects, and other questions discussed.

Main points

• My lymphoma is determined to be at stage 2a. They found two more tiny lymphoma on my left side chest and near left armpit
• Each alphabet of ABVD stands for a different type of drug
• Drugs will be administer every 2 week, for 8 times (One dose for every other week)
• Radiation therapy to follow after the completion of chemotherapy
• 80 % chance of long-live when treated with chemotherapy + radiation therapy

Side effects

• Hair loss (will grow back once chemotherapy is done)
• Nausea
• Possible damages to lungs, heart, veins, kidney, etc etc etc...

Other discussions

• Chemotherapy should not have a high effect on fertility (my doctor found this paper: Hematol Oncol 2007; 25: 11-15)
• Radiation therapy will only be applied on the affected area, which is far from my ovary; thus the doctor thinks it's unlikely to have an effect on my future pregnancy
• No restriction on food...I can eat whatever I want!

If I could figure out how to plug in a calendar on my blog, I will....but it'll be a week or so later.

Lots and lots of testings...

I was at Tsukuba University Hospital for the past 4 days, and my doctor gave me a permission for go home over the weekend. I will be going back to hospital Sunday night, and my chemotherapy will start next week Monday.

List out all the testings I went through

Tuesday: Blood test, X-ray, Electrocardiography

Wednesday: Bone marrow test (which I HATED IT!!)

Thursday: CT scan

Friday: Blood test, Echocardiography, lung test

Bone marrow test was the worst...it felt like the doctor was deforming my bone ;(

All these test were necessary to determine whether my disease has spread anywhere else in my body, and whether my body would be a good fit with the drugs I will be taking.

It may look like I did a lot each day but I was bored all the other time. Next tells the condition of the hospital.

A day in a life of a patient at TUH

Nurses wake you up at 6am. They take your temperature, weight, blood pressure, and oxygen content (in a body?) three times a day. Breakfast at 7:30 am. Lunch at 11:30 am. Dinner at 5:30 pm. Lights out at 9pm.

I shared a big room on the 10th floor of TUH with 4 other ladies, where each bed was separated by a curtain. One talkative lady had leukemia. One girl across from me seemed to be going through chemo that I heard her vomiting and murmuring often. The girl on right of my bed was treating something through radiation therapy. She was playing game (probably Nintendo DS) all night, all day long. I ate almost every meal with the lady on the left of my bed, at a cafeteria. It seemed like we were the only two from the room that could walk around freely.

Each patient could rent a TV for 240 yen per day. We weren't supposed to watch TV after lights out, but people did anyway. There were no internet available for patients. I could use my cellphone, but people were encouraged to only use the cellphone at a lounge, and turn off the cellphone otherwise, which nobody really did. It seemed like there were a lot of rules that were just there but nobody really followed. (In the bathroom, there was a sign saying "If you want to brush your teeth or shave, please find the appropriate time so that the bathroom would not be crowded at certain time. Please be considerate to others and do not use the sink for a long period of time.")

I realized yet again that Japanese people are very passive, even in hospital. When nurses ask me to measure blood pressure, they would always say "Could you please let me measure your blood pressure? (血圧を測らせていただけますか？）" In the States, it'll just be "Let's take your blood pressure." Even the doctors, when the treatment plan was finalized, my doctor said, "I was wondering if you could let us treat you this way.（このような治療法でやらせていただきたいのですが。）" I mean, I could only say "yes." They're all so polite that I felt like I don't know what I'm doing here anymore.

Symptoms of Hodgkin's

There were a lot of questions that doctors asked, which are common symptoms of Hodgkin's (or more like tumors in general). I'm going to list the symptoms that I was asked over and over, as a reference from my experience.

• Weight loss
• Fatigue easily
• Sweat at night
• Loss of appetite
• Fever

I'm sure there are more, some may be more common than others. The only symptom I seemed to have was itching, and I had no other symptoms.

Yukari's visit

Yesterday Yukari and Yukari's mom came all the way to Tsukuba to visit. We ate lunch together, and went for shopping! I totally forgot to take pictures but I will definitely do so next time.

It was really really nice to see them. Especially since I hadn't been out of house often or had an opportunity to meet people other than my parents (and people from hospitals). I really felt that friends and families are the one that brings me emotional strength.

One of my aunt in Tokyo sent me a big can of shark fin (ふかひれ). Supposedly this is good for recovery from chemotherapy....we'll see about that :p

Hospitalization schedule determined

I received a call from TUH and I will be hospitalized from next week Tuesday. I think they'll be moving my blood and bone marrow test to Tuesday as well. The first cycle of chemotherapy should also start once the test results are out.

I'm glad things are moving quickly and smoothly. I don't know if there will be Wi-Fi in the hospital because Japanese people are anal about having any type of electromagnetic waves near patients with heart pace maker and other sensitive equipment. Anyhow, I will try to keep it updated whenever possible...

How it looks

The patients of almost all blogs on Hodgkin's I read were female in their early twenties. Many of them experienced swollen lymphoma on their left neck as well. I thought it would be a good idea to show a picture of how my lymphoma looks as a reference. This image was taken about one week after my first clinical visit, presumably 1~1.5 months since it started swelling. When I touch it, it feels like a ball of flexed muscle.

I had a long hair, and I wear a turtle neck or scarves around my neck most of the time, so it was difficult for people to notice, and even for myself because it never hurt. I learned that just because something doesn't hurt, your body can still be going wrong.

1st doctor's appointment at Tsukuba University Hospital

Tsukuba University Hospital is the largest hospital near my home. Here I'm going to highlight what happened at Tsukuba University Hospital (TUH from now on), and my progress on curing Hodgkin's lymphoma.

Long waiting time

My mom and I entered and submitted a request of visit form with a referral letter to the admin desk of TUH at 9:30 am on Tuesday. The desks open at 9 am but it was full of patients already. I had a so-called "reservation" to see a doctor at sometimes in AM (apparently you can only reserve to be seen on AM or PM :p), but when I finally got to see the doctor, it was past 1 pm. I saw him for about 15 minutes. Yukari (a friend) said "that's like Disneyland's ride." I agreed.

Lack of privacy

One thing I felt strongly from this visit was a lack of privacy. When an admin lady at the clinical desk explained about the process of hospitalization, she was standing in the middle of waiting room, where people were listening quietly from 1 m away. Also when I went to submit paperwork for hospitalization to some sort of office within TUH, people could see and hear that I will be hospitalized, when and where. I'm not sure if I have this perspective because I've been living in the States for a long time?

Progress on Hodgkin's

The doctor first apologized for not wearing a formal uniform due to the whole cool biz in Japan. He was wearing a polo shirt and slacks. Here are the gist of what I learned from the first visit:

• Hodgkin's disease is rare for Japanese (only around 10 % of Japanese lymphoma patients are diagnosed with Hodgkin's)
• There is a standard treatment plan (標準治療法) for Hodgkin's lymphoma, set by Ministry of Health of some sort, which means the treatment should be the same anywhere available in Japan
• The itch I had been experiencing all over my body may be one of the symptom of Hodgkin's
• It will take around 6 months for the whole treatment plan
• The treatment will be a combination of chemotherapy and radiation
• I will be hospitalized for the first cycle of chemotherapy for a couple of days, but depending on my condition, I may be able to commute from home for rest of the cycles

Although I'm not Japanese by blood, I heard Hodgkin's is more common among ethnic backgrounds other than Asian.

My Hodgkin's story

I am Angie (and/or Eri :p), and I am a 25 years old graduate student at University of Washington. I was diagnosed with classical Hodgkin's lymphoma on July 8th, 2011.

I noticed that there was something bumpy on my lower left neck back in April~May of 2011, but I didn't pay much attention to it because I had no pain, nor any symptom that suggests abnormality in my health condition. Then on the second week of June, my roommate saw my neck and told me that there is something big on my neck. I also consulted with my mother who is a dentist about this bump on my neck, and she insisted me to go see a doctor right away.

I went to the school's Hall Health first, where I went through a blood test, X-ray, then ultrasound. The healthcare practitioner then made a doctor's appointment with UW Medical Center's Otolaryngology, Head and Neck Surgery Center. After that I went through a PET scan, then a surgical biopsy. These whole process--from the first clinic visit to the diagnosis-- took 4 weeks in total. It was one of the most stressful weeks of my life. My mom from Japan also came to see me right before my surgical biopsy.

Through the results of the surgical biopsy, the diagnosis was determined. I had more than one lymph nodes swollen, and the largest one was as big as 7 cm in diameter. The stage was determined to be in between 2 and 3. Then soon I took a flight from Seattle to Japan with my mom, for the treatment.

Fortunately I was able to see a doctor in Tsukuba University Hospital just a few days after my homecoming. The doctor told me that I should be able to start the treatment as soon as next week or the week after, and scheduled me to have another blood test and bone marrow biopsy next Thursday.

It was on the second week of Summer Quarter at the time of my diagnosis. I withdrew from one class that I was registered, packed all my stuff and subleased my apartment, told my professor that I cannot be working on research for awhile, and will be submitting leave of absence from school for the next 6 months or so.